February 2013
Hi Everyone
It is a while since I blogged. I have been on the site regularly and responded to a few other blogs, but I haven't said much about my current situation.
I'm sitting in the Wellness centre of a major cancer centre, having had the opportunity to leave the Day Oncology Unit for a few hours until they need to take some more blood. I am on a clinical trial of a new drug. I can recommend being on a clinical trial. It gives the opportunity to make sure that the future is better of other cancer patients, whilst also potentially benefitting yourself. Whilst on a clinical trial you really do receive better care as you are so closely monitored. In the last few weeks I have had all sorts of tests and scans that I normally would not receive unless something has gone wrong. If you want to find out about clinical trials and whether or not there is one available for you, go to Cancer Australia's clinical trials website www.australiancancertrials.gov.au/. That is where I learnt about this one. Took the details to my oncologist and here I am.
So what is my situation. Almost two years ago I stopped responding to hormone manipulation, which is one of the main treatments for advanced prostate cancer. I was put onto what is called Total Androgen Deprivation, but that did nothing. So in medical terms I am termed Castrate Resistant. It is a term I hate. I keep reminding the medical profession that as a male I have been castrate resistant for most of my life. So the last two years have been watching and waiting whilst the tumour progresses, into abdominal lymph nodes, engulfing the plumbing that goes from the kidney to the bladder, and now it appears that it started to invade bones. Side effects - lower leg lymphadaema, renal pain so a stent had to be inserted into the kidney, recurrent kidney infection. So far no bone pain. I'm still trying to keep as active as ever, but do get tired more often.
What is the trial about. It was once thought that when prostate cancer stopped responding to hormone manipulation that a clone of cells had developed that no longer need testosterone. It is now realised that this is not the case, the cells switch on internal pathways to produce their own testosterone. So there have been developed several new agents that target those internal pathways and switch them off. The drug that I am on is one of those. It is an interesting trial as initially it is randomised against a placebo, but eventually everyone will get the drug. It is an oral drug so it is a matter of taking a pill twice a day and being monitored closely. Today I am in here for thirteen hours having bloods taken and other tests done. That is repeated next week. After that it is each week for about five hours.
So apologies for not blogging as much as formally, but I have had a few things on my mind.
Cheers
Sailor
And a sailor you must be if you're going to try ocean voyaging. You'll need a modicum of sailing aptitude, some grasp of mechanical concepts, and a willingness to pitch in and work. Most veteran world sailors fall into the classification of restless adventurers who are always looking at distant horizons.
Hal Roth "After 50,000 Miles"
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February 2013
I also think he is quite pathetic but I don't feel sorry for him. He knew what he was doing and he was doing it before he was diagnosed with cancer and had chemo. There are plenty of examples of people who have offended the public rehabilitating themselves, they do it by keeping quiet and by ensuring they keep their noses clean for a good long period. No-one does it by taking up the activities in which they offended.
I feel sorry for those who took him as a role model, particularly those in Australia, and linked their success to his.
As Harker says, 'you can't unscramble and egg'.
Cheers
Sailor
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January 2013
Dear Mendesma
It is understandable that you want the best for your friend. However, there is no 'best' oncology specialist in Australia. There are many really good oncology specialists spread out around Australia and many of these will be right for your friend. How to access them? Well like many things in life you have to seek a balance. Balancing travel and your friends ability to travel, particularly is his disease progresses is one of those. Also, all the guidelines for cancer treatment now recommend that your friend be considered by a multidisciplinary team, not just one specialist. So you need to ask any specialist that he is part of a multidisciplinary team. You also need to let your friend make the decisions. These will depend on his values - for example quantity of life versus quality of life, heroic treatment versus treatment to ensure that he can remain active and part of his community for as long as possible.
I would recommend that you give the Cancer Helpline 13 11 20 a call and talk things over with them - my experience is that they are a hug help.
Regards
Sailor
An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody
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November 2012
I've used QBE and AAMI. They are generally OK with giving you insurance but it will not cover anything to do with a pre=existing condition, i.e. cancer. So if you walk under a bus you will be covered.
Cheers
Sailor
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November 2012
If any one uses the 'battle' metaphor about me when I am no longer here, I have said I will come back and haunt them! I don't mind the journey metaphor in the sense of Frost's 'The Road not Taken', otherwise I don't like that either.
Cheers
Sailor
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
Robert Frost
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November 2012
Hi Stressed Out
I am a bit surprised by your response. You should know if you are on a clinical trial and should have sign a consent form after receiving patient information and having it discussed with you. I looked up the NITRO trial and it does say it is randomised but not that it is double blind. However, it is very unusual not to have a double blind trial, so I again am surprised that you know whether or not your partner is having the nitroglycerine. Lung cancer is an awful disease that until recently was not getting much research attention. That is changing, but unfortunately that is for patients in the future.
Do make sure you look after yourself. As a carer it is easy to focus so much on the person with the cancer that you neglect yourself. In the months ahead you are going to be needed a lot more.
Regards
Sailor
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November 2012
Hi Gypsy 1946
Clinical trials are good things as you get to have a chance of the best practice therapy or the new agents. You also get looked after extremely well as you have to be so closely monitored. What happens is that ir order to find out of the new agent is better than existing best practice, patients are randomly selected to have either the best existing treatment or the new treatment. So they have to monitor everyone as if they had the new therapy. Neither the treating specialists or the patient know which they are getting, which is why they are called double blind randomised trials. It is a worry that the patient information is not readable and you should go back to the clinician and ask for it all to be explained to you.
There is good information about clinical trials on the Cancer Council websites. There is also the Australian Cancer trials website http://www.australiancancertrials.gov.au/.
Good luck with it
Sailor
The art of the sailor is to leave nothing to chance. Annie Van De Wiele
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September 2012
1 Kudo
Hi ducksnutts
You have a fairly restrictive requirement for a GP. AdCC is a rare tumour. Finding a GP who knows about it is a big ask as very few of them know a lot about any cancer let alone yours. How about turning the thing around that this is a chance to educate a good GP and help yourself as well. See if you can find a GP who you are happy with, is interested in cancer and that is willing to learn about AdCC. Then ask someone like your friendly radiation oncologist to provide them with the material that will help them learn and benefit you.
Cheers
Sailor
Hence a ship is said to head the sea, when her course is opposed to the setting or direction of the surges. William Falconer
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September 2012
Hi Docherty
I have advanced prostate cancer. Fourteen years since I was diagnosed, Stage 2b, Gleason 5 + 4. I've had several lots of radiotherapy, intermittent Androgen Deprivation (been through menopause eight times!) and currently on no treatment while they work out what to do with me. It isn't in my bones yet, just working its way through my lymph system.
I have been on a couple of clinical trials and keep an eye on www.australiancancertrials.gov.au/ and www.cancervic.org.au/trials to see what new trials of new agents are out there. At present I have not had cytotoxic chemotherapy and hope that that is a long way off. So in technical terms I am chemotherapy naive and castrate resistant. Hate that term - I prefer hormone refractory.
cheers
Sailor
You cannot change the direction of the wind. You can, however, trim your sails. Anon
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September 2012
Hi Jay may
Fatigue is the body's way of coping with all the cell repair that it must do - to normal cells. A friend of mine described it as like walking with your head in a fog and your feet in treacle. Go along with your body and just rest. That's what it is telling you and that is the best preparation for the next phase.
Hang in there and remember being positive is only for others, not for yourself. Whinge, scream at the moon, whatever you feel like doing. When others expect you to be positive tell them to b****r off! This time is for you and cell repair.
BTW - there is no evidence that being positive leads to better outcomes.
Cheers
Sailor
An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody
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